Supplementary material BMJ Open Supplementary Material Appendix 1 Read Codes to identify a child with a Life-limiting condition medcode clinicalevents referralevents testevents immunisationevents readcode readterm databasebuild 241 217428 9975 65 0 G30..00 Acute myocardial infarction Feb-09 245 7800 168 4 0 G410.00 Primary pulmonary hypertension Feb-09 318 411 23 0 0 B210.00 Malignant neoplasm of glottis Feb-09 319 4215 149 0 0 B21..00 Malignant neoplasm of larynx Feb-09 348 54604 2944 8 0 B34..11 Ca female breast Feb-09 512 61437 4071 14 0 K05..00 Chronic renal failure Feb-09 579 9051 803 14 0 BBE1.00 [M]Malignant melanoma NOS Feb-09 684 86980 7892 6 0 F20..00 Multiple sclerosis Feb-09 765 3287 381 1 0 BBe1.00 [M]Neurofibromatosis NOS Feb-09 780 123877 3483 21 0 B46..00 Malignant neoplasm of prostate Feb-09 865 30087 2172 10 0 B32..00 Malignant melanoma of skin Feb-09 1056 8129 525 4 0 B5z..00 Malignant neoplasm of other and Feb-09 unspecified site NOS 1062 16003 663 2 0 B10..00 Malignant neoplasm of oesophagus Feb-09 1204 4721 258 1 0 G30..14 Heart attack Feb-09 1220 35966 1430 2 0 B13..00 Malignant neoplasm of colon Feb-09 1391 312 6 0 0 C327100 Gaucher's disease Feb-09 1481 48 1 0 0 B600.00 Reticulosarcoma Feb-09 1483 12690 675 2 0 BBg1.11 [M]Lymphoma NOS Feb-09 1599 4047 172 1 0 B4A0.00 Malignant neoplasm of kidney Feb-09 parenchyma 1624 38351 2463 10 0 BB2A.00 [M]Squamous cell carcinoma NOS Feb-09 1800 21118 946 2 0 B141.00 Malignant neoplasm of rectum Feb-09 1950 9157 203 0 0 BB4..00 [M]Transitional cell papillomas and Feb-09 carcinomas 1952 166 3 0 0 B580.00 Secondary malignant neoplasm of kidney Feb-09 1986 11636 589 3 0 B440.11 Cancer of ovary Feb-09 2123 944 54 1 0 BBc1.00 [M]Neuroblastoma NOS Feb-09 1 Fraser LK, et al. BMJ Open 2020; 10:e034024. doi: 10.1136/bmjopen-2019-034024 Supplementary material BMJ Open 2272 28720 722 23 0 BB5..11 [M]Adenocarcinomas Feb-09 2298 2427 120 0 0 F203.00 Exacerbation of multiple sclerosis Feb-09 2462 10288 433 13 0 B61..00 Hodgkin's disease Feb-09 2492 9864 1312 66 0 B33z.00 Malignant neoplasm of skin NOS Feb-09 2587 35784 1469 5 0 B22z.11 Lung cancer Feb-09 2744 3591 129 2 0 B40..00 "Malignant neoplasm of uterus, part Feb-09 unspecified" 2747 7108 210 1 0 B41..00 Malignant neoplasm of cervix uteri Feb-09 2755 19616 1231 106 0 B....11 Cancers Feb-09 2815 6116 113 1 0 B133.00 Malignant neoplasm of sigmoid colon Feb-09 2816 833 34 0 0 P51..00 Transposition of great vessels Feb-09 2835 6829 291 5393 0 43C3.11 HIV positive Feb-09 2890 7205 174 2 0 B430200 Malignant neoplasm of endometrium of Feb-09 corpus uteri 2961 1999 106 0 0 B47z.11 Seminoma of testis Feb-09 3152 13083 265 0 0 BB13.00 "[M]Carcinoma, metastatic, NOS" Feb-09 3197 22344 1073 2 0 BB03.00 "[M]Neoplasm, metastatic" Feb-09 3204 20442 926 6 0 G55..00 Cardiomyopathy Feb-09 3213 294 19 0 0 B430.00 "Malignant neoplasm of corpus uteri, Feb-09 excluding isthmus" 3230 4027 195 0 0 B41..11 Cervical carcinoma (uterus) Feb-09 3357 1876 129 0 0 B1...11 Carcinoma of digestive organs and Feb-09 peritoneum 3371 3101 115 0 0 BBg2.11 [M]Non Hodgkins lymphoma Feb-09 3541 536 56 0 0 B48..00 Malignant neoplasm of penis and other Feb-09 male genital organs 3591 4247 308 0 0 F134.00 Huntington's chorea Feb-09 3604 14600 525 0 0 B627.00 Non - Hodgkin's lymphoma Feb-09 3710 407 34 0 0 BBB1.00 [M]Adenolymphoma Feb-09 3811 6639 194 0 0 B134.00 Malignant neoplasm of caecum Feb-09 3862 244 16 0 0 P601.00 Congenital atresia of the pulmonary valve Feb-09 2 Fraser LK, et al. BMJ Open 2020; 10:e034024. doi: 10.1136/bmjopen-2019-034024 Supplementary material BMJ Open 3903 34821 1333 3 0 B22z.00 Malignant neoplasm of bronchus or lung Feb-09 NOS 3947 6445 288 10 0 P1...00 Spina bifida Feb-09 3968 128623 3421 8 0 B34..00 Malignant neoplasm of female breast Feb-09 3969 21 0 0 0 BB9M.00 [M]Intracystic carcinoma NOS Feb-09 4072 544 43 0 0 B680.00 Acute leukaemia NOS Feb-09 4118 360 14 0 0 BBV9.00 [M]Myxoid chondrosarcoma Feb-09 4137 5072 154 1 0 B570.00 Secondary malignant neoplasm of lung Feb-09 4158 1619 149 0 0 PG51.00 Osteogenesis imperfecta Feb-09 4165 641 70 0 0 F140.00 Friedreich's ataxia Feb-09 4217 770 26 0 0 BB5c.00 [M]Parathyroid adenomas and Feb-09 adenocarcinomas 4218 48 0 0 0 B541.00 Malignant neoplasm of parathyroid gland Feb-09 4222 2158 123 0 0 B64..11 Lymphatic leukaemia Feb-09 4250 3215 381 0 0 B68z.00 Leukaemia NOS Feb-09 4251 2752 114 0 0 B640.00 Acute lymphoid leukaemia Feb-09 4272 983 58 0 0 PH3y200 Epidermolysis bullosa Feb-09 4388 897 21 0 0 B020.00 Malignant neoplasm of parotid gland Feb-09 4403 13552 429 0 0 B577.11 Liver metastases Feb-09 4413 6444 194 0 0 B650.00 Acute myeloid leukaemia Feb-09 4473 590 13 0 0 BBY0.00 [M]Ewing's sarcoma Feb-09 4478 1446 87 0 0 F256.00 Infantile spasms Feb-09 4479 1238 93 0 0 PK5..00 Tuberous sclerosis Feb-09 4554 1713 44 0 0 B454.00 Malignant neoplasm of vulva unspecified Feb-09 4632 14309 947 1 0 B33..00 Other malignant neoplasm of skin Feb-09 4637 722 14 0 0 BBr..00 [M]Leukaemias Feb-09 4673 P20..00 254 0 8 0 Encephalocele Feb-09 4796 F152.00 10361 0 689 0 Motor neurone disease Feb-09 4852 642 90 0 0 BB24.12 [M]Verrucous squamous cell carcinoma Feb-09 4865 7627 274 1 0 B10z.11 Oesophageal cancer Feb-09 4944 14705 788 3 0 B630.00 Multiple myeloma Feb-09 5052 250 13 0 0 BBV1.13 [M]Osteogenic sarcoma NOS Feb-09 3 Fraser LK, et al. BMJ Open 2020; 10:e034024. doi: 10.1136/bmjopen-2019-034024 Supplementary material BMJ Open 5136 80 10 1 0 B911013 Choriocarcinoma Feb-09 5137 302 81 1 0 B624.11 Leukaemic reticuloendotheliosis Feb-09 5179 232 11 1 0 B620.00 Nodular lymphoma (Brill - Symmers Feb-09 disease) 5198 3093 125 0 0 B583000 Secondary malignant neoplasm of brain Feb-09 5199 5722 87 0 0 B583200 Cerebral metastasis Feb-09 5306 235 15 0 0 P100000 "Spina bifida with hydrocephalus, Feb-09 unspecified" 5393 672 51 0 0 F391000 Duchenne muscular dystrophy Feb-09 5395 2491 73 0 0 A540.00 Eczema herpeticum - Kaposi's Feb-09 varicelliform eruption 5431 P11..00 87 0 1 0 Spina bifida without mention of Feb-09 hydrocephalus 5443 305 6 0 0 F122.00 Malignant neuroleptic syndrome Feb-09 5455 2673 45 0 0 BB53.00 "[M]Adenocarcinoma, metastatic, NOS" Feb-09 5637 5356 129 2 0 B53..00 Malignant neoplasm of thyroid gland Feb-09 5712 2991 84 0 0 P21..00 Microcephalus Feb-09 5842 6910 159 0 0 B58..00 Secondary malignant neoplasm of other Feb-09 specified sites 5901 9334 321 0 0 B141.12 Rectal carcinoma Feb-09 5915 536 12 0 0 BBrA400 [M]Hairy cell leukaemia Feb-09 5932 493 19 0 0 BB06.00 "[M]Tumour cells, uncertain whether Feb-09 benign or malignant" 5964 1625 125 2 0 F39B.00 Muscular dystrophy Feb-09 6170 10811 117 0 0 B590.11 Carcinomatosis Feb-09 6220 13732 778 263 0 C370.00 Cystic fibrosis Feb-09 6316 245 4 0 0 BBr0100 [M]Acute leukaemia NOS Feb-09 6436 3624 40 0 0 BB43.00 [M]Transitional cell carcinoma NOS Feb-09 6471 1998 50 0 0 B57..11 Metastases of respiratory and/or Feb-09 digestive systems 6515 P211.00 231 0 2 0 Micrencephaly Feb-09 6712 3881 65 1 0 K050.00 End stage renal failure Feb-09 4 Fraser LK, et al. BMJ Open 2020; 10:e034024. doi: 10.1136/bmjopen-2019-034024 Supplementary material BMJ Open 6746 2004 25 1 0 BB5M.00 [M]Tubular adenomas and Feb-09 adenocarcinomas 6806 187 6 0 0 B12..00 Malignant neoplasm of small intestine Feb-09 and duodenum 6883 951 15 0 0 Q317000 Perinatal bronchopulmonary dysplasia Feb-09 6920 640 22 0 0 BB5U.00 [M]Villous adenomas and Feb-09 adenocarcinomas 6935 745 5 0 0 B131.00 Malignant neoplasm of transverse colon Feb-09 6966 267 1 0 0 BB1D.00 [M]Spindle cell carcinoma Feb-09 7046 2915 13 0 0 B43..00 Malignant neoplasm of body of uterus Feb-09 7176 2417 106 0 0 B65..00 Myeloid leukaemia Feb-09 7219 2385 46 0 0 B141.11 Carcinoma of rectum Feb-09 7319 240 0 0 0 BB9G.00 [M]Infiltrating ductular carcinoma Feb-09 7476 942 17 0 0 BBQ1.00 [M]Seminomas Feb-09 7484 4152 107 0 0 B226.00 Mesothelioma Feb-09 7535 3403 77 0 0 G554400 Primary dilated cardiomyopathy Feb-09 7593 3116 266 0 0 H51y700 Malignant pleural effusion Feb-09 7654 7216 308 2 0 B585.00 Secondary malignant neoplasm of bone Feb-09 and bone marrow 7740 236 10 0 0 B470200 Seminoma of undescended testis Feb-09 7805 9705 177 0 0 B440.00 Malignant neoplasm of ovary Feb-09 7830 2203 37 0 0 B56..11 Lymph node metastases Feb-09 7856 362 15 0 0 BBJH.00 [M]Dedifferentiated liposarcoma Feb-09 7940 453 8 0 0 ByuDF11 [X]Non-Hodgkin's lymphoma NOS Feb-09 7941 183 2 0 0 BBW4.00 [M]Chondrosarcoma NOS Feb-09 7945 134 0 0 0 F256000 Hypsarrhythmia Feb-09 7982 224 2 0 0 B161200 Malignant neoplasm of common bile duct Feb-09 8010 3501 202 0 0 G551.00 Hypertrophic obstructive cardiomyopathy Feb-09 8032 1365 37 0 0 BB5B.00 [M]Pancreatic adenomas and carcinomas Feb-09 8085 2979 102 0 0 BBF1.00 [M]Sarcoma NOS Feb-09 8088 18 1 0 0 BBG3.00 [M]Fibromyxosarcoma Feb-09 8101 2854 120 0 0 BB5a.00 [M]Renal adenoma and carcinoma Feb-09 5 Fraser LK, et al.